Mandela confronted HIV in the end – but today, treatment problems remain

Date Released: Wed, 11 December 2013 14:30 +0200

The International Conference on Aids and Sexually Transmitted Infections (ICASA), which kicked off in Cape Town on Monday, is one of many important events which will not receive the media attention it would have warranted at any other time due to the mourning for Nelson Mandela.

Mandela himself had a mixed record on HIV: initially failing to meaningfully address the growing problem during his presidency, and then becoming increasingly concerned about the inaction of his successor Thabo Mbeki on the matter.

During the last years of his life Mandela devoted much time to speaking out for the rights of people living with HIV and Aids. He would undoubtedly be distressed to hear that the government’s ARV programme appears to be in some trouble.

It is now accepted that one of the most powerful public acts Nelson Mandela undertook in later life was to stand in front of South Africa in 2005 and announce that his son, Makgatho, had died from Aids. “Let us give publicity to HIV/Aids and not hide it, because the only way to make it appear like a normal illness, like TB, like cancer, is always to come out and to say somebody has died because of HIV,” Mandela said at Makgatho’s funeral. “And people will stop regarding it as something extraordinary.”

As late as 2005, it was still an act of courage, given the silence and shame that continued to surround the disease in many quarters. A similarly notable step had occurred three years earlier, when Mandela visited an antiretroviral programme set up in Khayelitsha by Medecins Sans Frontieres at a time when the government was still dragging its feet on rolling out a widescale public ARV programme. On that occasion, Mandela donned the ‘HIV-positive’ T-shirt made famous by the Treatment Action Campaign under the leadership of Zackie Achmat: another slap in the face to stigma and secrecy.

But it was not always thus, and in the days since Mandela’s death Aids activists and scientists have mused on Mandela’s mixed legacy when it came to HIV/Aids. Inevitably, they may be inclined to view it in a softer light at this moment. In an interview with PBS a few years ago, HIV-positive Constitutional Court Judge Edwin Cameron said that when Mandela took up office in 1994, there was “consensus on the importance of HIV, but…I think there was widespread involuntary denial about it.”

“I’m not talking about ideologically motivated ‘denialism’, which President Mbeki introduced...” Cameron continued. … “I’m talking about the defensive psychological mechanism of denial, where you know you’ve got a problem – you’ve got other things to deal with and you don’t want to accommodate the thing you have to deal with among your frame of action.”

Mandela, Cameron said, had the “moral authority” to meaningfully speak out about Aids, yet did not do so. “He had a set of pressing priorities which took precedence,” Cameron said: political stability, economic policy, racial reconciliation, international relations. Mandela later admitted as much: the Guardian reported on Friday that he told the BBC that during the 1994 elections, “I wanted to win, and I didn’t talk about Aids.”

But later in his life he devoted the majority of his public time and attention to work on HIV/Aids. The Guardian noted: “As Mandela grew older and more fragile, he gave up all engagements except those at which he was invited to speak on Aids”. His charity 46664 was able to leverage his international status to raise vital funds and awareness for the pandemic. Thabo Mbeki’s stance of denialism towards the issue is known to have severely concerned him.

Indeed, it was interesting to see the adulation expressed by the crowd towards Mbeki at Wednesday’s Johannesburg memorial.

Even given mounting disapproval towards Zuma’s presidency – the ‘grass is greener’ syndrome – it suggests a shortness of collective memory about the damage Mbeki undoubtedly did to attempts to stem the pandemic. A Harvard report in 2009 estimated that at least 365,000 South Africans died directly as a result of Mbeki’s continued refusal to recognize that HIV caused Aids.

The support Mandela offered the TAC and its leader Zackie Achmat after stepping down has also been at odds with the attitude his successors have appeared to hold towards public health-related civil society organisations. It was a point made by MSF’s Medical Coordinator for South Africa, Gilles van Cutsem, at a press conference at ICASA on Wednesday afternoon. “Mandela expressed support for those living with HIV and thought we needed a vibrant civil society,” van Cutsem said. “We ask government to express their support for a vibrant civil society.”

That this is not currently the case was evidenced particularly in a recent case explained by Section 27’s Mark Heywood at the same conference. The TAC in the Free State, Heywood said, has played a “pioneering role” in drawing attention to the fact that many Free State health facilities have been experiencing critical ARV stockouts. “This has drawn such ire from the Free State government that the leader of TAC Free State has received anonymous death threats and we have had to move that person out of the Free State,” Heywood said.

Heywood also claimed that the laptops of civil society representatives on the (supposedly independent) Free State Aids council had recently been confiscated by a group of security officials claiming to be from the Hawks, on the grounds that they wanted to find out who had been leaking information about problems within the Free State health system.

A recent survey by an independent consortium called the Stop Stockouts Project – of which TAC and MSF are members – found that the Free State has been hit particularly hard by critical drug shortages in the past year. 54% of the Free State health facilities contacted by the group during September and October reported that over the past three months, they had experienced a total stockout or shortage of the necessary drugs. The average duration of the stockout was 30 days.

In a just-released publication aiming to analyse the efficacy of the government’s NSP (National Strategic Plan) for tackling HIV/Aids and TB, brought out by TAC and Section 27, the organisations report that stockouts “have reached extreme danger levels and may be directly affecting up to half a million people living with HIV”.

The publication quotes one affected patient, in what seems to be a fairly typical scenario: “I am a patient at a clinic in Tzaneen and have been on ARVs since 2005. I went to the clinic this year and was given only 2 weeks supply and told to come back when finished. When I went back at the end of 2 weeks, I was told that the drugs were out of stock and I went for 2 weeks without treatment. At present, I have found out that my CD4 count has decreased from 1,000 to 500.”

Patrick Mdletshe, TAC’s KwaZulu Natal chairperson, told journalists on Wednesday: “Daily in different provinces, but in particular in Free State and Mpumalanga, we are seeing people queuing from 4am just to go to clinics or hospitals.

For us that is unacceptable.” HIV, he said, was continuing to show up the cracks in South Africa’s health system, with under-resourced clinics, overworked doctors and nurses, and generally poorly-managed, poorly-remunerated healthcare staff.

Civil society organisations are at pains to stress that the picture is not all bad. Since 2003, when infamous Health Minister Dr Manto Tshabalala-Msimang finally announced plans to treat HIV-positive South Africans with anti-retroviral drugs in the public sector, South Africa has managed to get the largest ARV programme on earth up and running.

“That is a huge achievement, and we don’t intend to blemish that achievement,” Heywood said. But part of the problem is to do with record-keeping: it is actually not known how many people are properly on ARV treatment at the moment. 2,4 million people are believed to have been initiated on to the programme, but that figure does not reflect how many adhere to treatment or how many drop off treatment.

“We are a decade into the largest ARV treatment programme in the world and still battle to understand how many people are on treatment,” Dr Francois Venter, of the HIV Clinicians Society, said on Wednesday at ICASA. “The ARV programme as a whole is performing beyond our wildest dreams.

Where it is failing is at the provincial implementation level.” Venter said too that when civil society health organisations raise problems at the provincial level, “there is a defensiveness which is very difficult to deal with”. The media was urged to spread the number of the Stop Stockouts hotline, to which medicine shortages at clinics can be reported and will be investigated: 084 855 7867.

Section 27’s Heywood said that in some respects it felt difficult to be going ahead with Wednesday’s press conference while the eyes of the country, and the world, were on the FNB Stadium in Johannesburg for Mandela’s memorial. “But what we’re trying to do is in keeping with one of the things Mandela spoke out most passionately about,” he said: “The rights of citizens living with HIV.”

Photo Caption: Anti-retroviral (ARV) drugs sit on a shelf in the pharmacy at the Ubuntu clinic in Cape Town's Khayelitsha township, February 15, 2010. In South Africa, 5.5 million people live with HIV/AIDS ? more than in any other country - while 33 million people live with the disease worldwide. Some 14,000 patients, including including close to 1,000 children, are on ARV treatments in Khayelitsha, which in 1999 launched the first public health ARV programme in Africa. The township's clinics are now seen as models on how to treat HIV/AIDS in impoverished communities. REUTERS/Finbarr O'Reilly

By: REBECCA DAVIS

Rebecca Davis studied at Rhodes University and Oxford before working in lexicography at the Oxford English Dictionary. After deciding she’d rather make up words than define them, she returned to South Africa in 2011 to write for the Daily Maverick, which has been a magnificilious decision.